Hip and lower back pain: Hi there . I’m relatively... - PMRGCAuk

PMRGCAuk

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Hip and lower back pain

Looby60 profile image

Hi there .

I’m relatively new here .

Started on 15 mg Pred reduced down to 5 over a period of weeks .

Been feeling the shoulder and upper arms ache first thing in a morning but not excessively and it wore off quite quickly through the day .

Today my lower back hips and buttocks are very painful when I get up , sit down or walk .

It has got progressively worse throughout the day .

Does anyone know if this is a flare up and should I up my Pred a bit.

Or is it not related to polymyalgia do you think .

Appreciate any advice.

Thank you

17 Replies

Reducing from 15mg to 5mg over a period of weeks sounds rather fast to me. PMR normally lasts well over a year and on average 5.9 years before going into remission. If it were me I would go back to the last dose where you were comfortable and hang on in there until you feel comfortable again when you can think of starting to reduce again.

Looby60 profile image
Looby60 in reply to piglette

Thank you I will try that

Hello, given that this is a condition that burns itself out in years, the plan to reduce to five over weeks is quite hasty. From their location, your pains sound like the buildup of inflammation is occurring because the Pred level is no longer sufficient to keep it at bay. Remember the Pred is to stop the inflammation only, it isn’t a cure for the autoimmune activity that produces the inflammation which = pain. Normally it takes months to get to 5mg. Out of interest, what did the doctor tell you was going to happen?

Have you told your doc that you have stopped being comfortable? You need to get back to where you were fully controlled and stay there for a bit. If it was me, I’d stay for a month or more which is the more usual period for the starting dose.

The other thing to consider is your daily activity. It is common for people to feel better and go back to their normal activity or even more, to catch up on things left undone previously. The aforementioned autoimmune activity does require plenty of rest because it uses up a lot of energy and PMR and Pred make muscles more easily strained. Slowing down is often the hardest part about this.

Looby60 profile image
Looby60 in reply to SnazzyD

Thank you so

Much for your informative reply .

This is the 3rd flare up since March.

Each one has been slightly different .

This affecting lower back and hips is by far the worst.

Initially the Dr got me to reduce down by 5 mg per week.

Then within a week I had numbness in hands and the shoulder pain .

This time reducing by 5 again and it soon came back .

Most recently was told to reduce by 2mg and was fine until I got down to 5.

Dr seems to be letting me get on with it .

Although as far as I am aware have not at any time had raised blood markers.

Sorry for long reply .

Hope this makes sense . 😊

SnazzyD profile image
SnazzyD in reply to Looby60

Don’t worry, that’s not a long post by our standards! I’m really not surprised you flared. What did the doc say was going to be the plan and what expectations did they or you have?

Not everyone gets raised markers at all, even at the height of their illness and even if you did at the beginning there can be a lag between getting inflammation and pain and the markers rising significantly. Symptoms should rule, not what the labs say, for this reason, but some docs use that as their primary guide. Some people have raised markers for them that are still within the normal range, but again docs usually don’t believe that is a thing. I know my CPR and ESR rarely budge from 3 and 4, and at the height of GCA and my eyes shutting down they were raised but still nicely in the normal range.

Looby60 profile image
Looby60 in reply to SnazzyD

Dr has given no plan .

Not spoken to him since last flare up.

I just re ordered pred and he passed it without question.

And have done likewise this week.

Have only spoken with him via phone consultation .

Obviously with Covid our med centre isn’t seeing people.

Basically being left to adjust as I see fit.

Never had raised markers on the first blood test either.

I am getting far more knowledge and advice from this site.

Which incidentally came up at the bottom of the nhs polymalgia site.

Thank goodness it did. 👍

PMRpro profile image
PMRproAmbassador

To reduce from 15 to 5mg pred in weeks is very fast. The first time I was given pred it was as a 6 week taper, 2 weeks each of 15, 10 and 5mg. Within 6 hours of the first tablet the difference was amazing although the hip and foot pain due to bursitis and tendonitis took much longer to fade in the end, Even during the 2 weeks at 5mg I was able to move and function almost normally but within 6 hours of missing that first 5mg dose I was as bad as at the start. Because of the flare that ensued I have struggled to get things under control again - and here we are talking years, not months.

Low back, hip and buttock pain signals piriformis syndrome to me - and it is not uncommon alongside PMR since the hip bursitis leads to various things that puts the piriformis muscle under stress and it tightens to try to protect itself causing pain. It is partly caused by the same inflammatory substances as PMR so it does improve with pred.

There are too many doctors claiming they can't see patients because of Covid - on that basis a large proportion of the population will die of undiagnosed illnesses! It is perfectly possible to see patients - if you want to.

I am down to 5 mg from 15 over a year and also have hip pain so it was interesting to read your replies. I do think you have reduced very quickly but like some of the others Ive been left to get on with it

Just gotten to 5mg after 2.5+ years

If your GP is anything like my previous GP she equated low or non existent blood markers to mean PMR was slight which would take less time to go into remission!! Consequently she didn’t understand when I found it difficult to reduce, had several flares and then developed GCA which I feel she constantly denied. 20/25% of folk have normal bloods so this doesn’t equate at all with how quickly you can reduce or when the doctor feels that you should be free of PMR. PMR lasts as long as it lasts and a reduction plan that he had suggested to you was very likely to fail. As others have said, go back to where you last felt comfortable and take the tapering ( not sudden reduction) very slowly perhaps using one of the reduction plans pinned on this site. And the recommendation is not more than 10%. Obviously the lower the dose the more % taper you make. I have personally found that I have to do a very slow taper, repeating the steps quite often and not tapering more than 1/2 mg every time since 11 mg. But that is me, everyone is different. But if it’s slow if doesn’t matter - if it works that is the main thing. Agree too that there is no reason why your GP can’t see you , dentists do and their work is a lot more invasive. Where have all the GPs disappeared to?!!

PMRpro profile image
PMRproAmbassador in reply to Jackoh

I was listening to a dentist in the UK whinging about how long it takes to do each patient - and they were closed, not even emergencies, for ages. Our dentists stayed open for emergencies only for the first month and then it was back to normal service. My guy said it made very little difference to them, each room is cleaned down between patients anyway and they use PPE. All they have done differently is only what will definitely be used for each patient is left out, anything else is fetched fresh and it goes straight into the autoclave or bin afterwards. Such a difference between different countries. Our GPs are working almost normally - except they have changed prescription rules - you just ring and it is sent to the pharmacy direct and you get an appointment time for the surgery instead of turn up and wait. She is even doing house calls!

A practical question: how were you able to accurately reduce by such small amounts? Did, you, for example, get 1mg tabs and then split them in half?

PMRpro profile image
PMRproAmbassador in reply to MrTamborine

It is possible to get 2.5mg tablets but even without, cutting a 5mg in half is often easier than cutting a 1mg and you make up the dose with 1mg tablets. That takes you down to 2mg without problems. 1mg can be cut for the last stretch - fiddly but accuracy isn't that significant. All you need is less than the whole and it makes up over 2 days.

MrTamborine profile image
MrTamborine in reply to PMRpro

Thanks PMRpro. As always, your posts are so very helpful.

Jackoh profile image
Jackoh in reply to MrTamborine

I have always cut my 1 mg tablets ( ordinary white ones) with the cutter like the one that Dorsetlady suggested. I did have a round shaped cutter and that was really useless but the oblong shaped one that I got from Amazon has been fantastic. Very rarely the one “half” is a bit bigger than the other”half “but that hasn’t posed a problem.

MrTamborine profile image
MrTamborine in reply to Jackoh

I just ordered a pill cutter from Amazon! Thanks for the suggestion!

I’m in the US and my 1mg tablet are scored and break in half rather easily. Good wishes to all.

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